Running out of Tricks

Well, Elise had a "liver clinic" appt today at Texas Children's Hospital.  I really don't want to rehash every detail...but suffice it to say that the tone was not as bright as I would have liked.  I mean, it could be much worse though.  So, although Elise's conjugated bilirubin level is still perfect at 0.0, and most of her other liver enzymes are also trending down towards normal, the big problem we have currently is an extremely high GGT level at 1796 and lack of weight gain.  She currently weighs 11 lb 6 1/2 oz, which is barely on the growth charts for her age, 4 1/2 months. Dr. Fishman basically said that looking at her GGT levels which continue to increase at each draw, and considering her slow weight gain, he has to conclude that she has very poor nutrient absorption and abnormal liver function, which typically results in "failure to thrive," which is one of the indications for transplant.

Up until now, Dr. Fishman has been very hesitant to even mention the word "transplant," because he has always said that we were not on that road yet. So, of course, I began questioning him like a mad woman. Mainly, I wanted to know if the fact that he is mentioning transplant means that it is in our near future.  He said that he is not 100% sure, but that he didn't want me to be shocked if she is referred for transplant evaluation within the next year...if things don't shape up with her GGT and weight gain.

Before Dr. Fishman left the room, he said, "Just try not to think about it so much."  I looked at him, like, "Are you kidding me?" He sat down again and tried to convince me that for the sake of my mental health, I need to let him do the worrying. He even said he would be happy to keep all of her lab result details to himself and just tell me generally "good" or "bad," and "stay the course," or "here's the changes we need to make." While I appreciate his concern and understand his rationale, that's just not going to work for me right now. I feel that I need to know every detail because it's the only way that I feel well-informed and able to ask appropriate questions and advocate for Elise as needed.  To not keep myself informed is to be passive, and that's just not for me when it concerns my child.

SO, the dietician met with us during our appointment and adjusted Elise's diet yet again in an effort to increase her calories and nutrition.  Now I'm supposed to mix Polycose powder 3 cal/oz into her Pregestimil 24 cal/oz and also give her 2 mL of MCT or coconut oil three times per day. She said she is "running out of tricks" though, so if this does not produce significant results, the next step will most likely be an NG feeding tube. I've mentioned before how I feel about the feeding tube...but bottom line is that we will do what we have to do.


ELISE'S LIVER PANEL-  3/6/12
AST- 100           (range 20-60)
ALT-78              (range 6-50)
Alk Phos- 406    (range 110-320)
GGT- 1796        (range 11- 82)
Albumin- 4.4      (range 3.9- 5.1)
Bili Unconj - 0.2 (range < 1.0)
Bili Conj-  0.0     (range < 0.3)